Autism Road to Recovery

I am a mom of 3 beautiful kids. Marley has autism and left hemiparesis Cerebral Palsy. Skylar has recovered from sensory processing disorder and my boy, Xander, is neurotypical with severe, life-threatening food allergies.

Saturday, February 20, 2016

In Sept of 2014, we took on a new doctor for my then 11 year old daughter with
autism.He is MAPS certified (Medical
Academy of Pediatric Special Needs) and came highly recommended, especially for
those kids that have low methylfolate in their cerebral spinal fluid, as my
daughter did.He is also very versed in
mitochondrial problems in kids with autism spectrum disorder.He put her on prescription high dose folinic
acid (not folic acid) for her cerebral folate deficiency and also asked us to
trial LevoCarnitine for possible mitochondrial dysfunction.L-Carnitine helps to carry fat into the cell and convert it to energy. Although her
Carnitine panel was normal and her serum amino acids testing was cleared by
mitochondrial specialists at our local hospital, he told me that Carnitine is
stored in the tissue and muscle and not in the blood, so blood testing for
Carnitine can be unreliable.Our local
pediatric neurologist also confirmed this information with me.In addition, one reason for low folate in the
cerebral spinal fluid is a lack of ATP (energy) to get it there.

Our introduction to Leucovorin (high dose folinic acid) for her low folate levels was rocky and she
reverted back to her very irritable self… the likes of which we had not seen in
YEARS.Then I added Rx Levocarnitine
(prescription generic Carnitor).We
immediately saw positive things with the addition of LevoCarnitine.She calmed right down but she was no longer
fatigued all the time.She stopped
constantly yawning.She started to
perform better in school.I was
amazed.

The following year, in Sept 2015, Marley sat in this doctor’s office telling
him that she feels “bouncy” in class.She had just started middle school and her biggest issue was having to
sit through 45 minute periods.It was
clearly an attention problem.He ordered
our standard work-up and suggested that we double our levocarnitine dose.She was already on a quality B complex, so
were supporting her mitochondria that way.I asked… “But, why do we want to increase her energy?She is already bouncy?”He said “We want to increase her brain’s energy
to function.”And boy… was he ever
right.

Interestingly, the Carnitine panel again showed completely normal… even after
supplementing it for a year.

After doubling her dose of levocarnitine, she is now able to sit through class
and focus on the task at hand.She is
finishing my sentences for me.She is
playing piano.She is getting all A’s
and B’s in school.

Let’s let that last statement sink in……This was a child that had SEVERE, nonverbal autism.She was completely detached and could not even
function in an autism classroom.Now,
she that she is being treated for her mitochondrial problems and her cerebral
folate deficiency and is eating a dairy free diet with only whole foods and
nothing processed, she is conversational, 100% mainstreamed in school and
making A’s and B’s in the regular curriculum.

This study showed that with the addition L-ActylCarnitine ,“we
observed of a stronger reduction of hyperactivity
and improvement of social behavior in patients treated with LAC, compared with
the placebo group.”

We use prescription levocarnitine but there are brands that are over the counter
that are reliable as well, such as the NOW brand. Since L-Carnitine carries fat into the cell, it should be taken with a fatty food.

I think that it is important to realize that when the body goes through major
changes (such as puberty), more ATP or energy is needed to fuel that
transition.If the mitochondria are
already impaired, the brain’s function will suffer and the child will lose
focus. This is not an all or none type
of situation.The mitochondria can be
impaired without having full-on mitochondrial disease.We call this mitochondrial dysfunction.In kids with autism, we see this manifest in
many ways including, but not limited to, seizures, Cerebral Folate Deficiency,
inflammation, oxidative stress, impaired methylation, iron deficiencies,
thyroid problems and so on.

Her pediatric neurologist saw her last week and was very pleased with her progress saying that Levocarnitine and Leucovorin are very safe, low risk supplements even at prescription strength, so he feels very comfortable with her protocol.

My hope is that when parents and doctors alike see issues of attention
deficient disorder in their children and themselves, they will begin to look at
the biochemical pathways and biomarkers for mitochondrial dysfunction to find
the best and most effective way to treat this symptom of a larger problem.

Thursday, June 11, 2015

Here we are. Fifth
grade graduation.The school gym is hot
and sticky.It is noisy with kids eager
to get summer vacation started.The
smell of sweaty kids is in the air.There
is laughing and talking and all the echoes that a gymnasium brings.Parents have gathered with their cameras and
video cameras to watch their 5th grader move on to middle school.I smile at my husband who has been my rock,
then I slowly scan the room taking it all in.The proud parents smiling.The wistful
parents with misty eyes.The busy parents
chatting with each other.And I am amazed
that we even got here.

For me, this day brings a multitude of emotions.My 5th grader is not your typical
5th grader.She has
challenges.She was born with a major
brain bleed that affects her motor skills.She has autism.She has
autoimmune and other medical diagnoses.I flashback to when she started kindergarten here, seven years ago.Marley was five and she and I were both
frightened.She had to be in a self-contained
classroom because she couldn’t tolerate any sensory stimuli.She had a few words but she did not talk in
complete sentences.Many days, I had to
carry her into the school, kicking and screaming where I would place her into
the care of “autism specialists” and they would escort her into a tent in a
quiet corner of the room where she spent most of the day shivering and
receiving therapies in the tent.I would
walk back to my car and cry for hours, not knowing if I could stand the pain
much longer.It was a heartbreaking
time.

The following year, she was left behind to try kindergarten again.This year, they would try to bring her to the
mainstream kindergarten classroom for a few minutes each day.Maybe just for circle time so she could see
what typical peers do.She needed someone
by her side every minute to keep her focused and engaged.And even then, it didn’t last long.Then, back to the self-contained classroom
she went.

In first grade, a boy in her self-contained class sent the special needs
teacher to the hospital with a concussion.When I brought her to school the next day, they had moved my daughter’s
desk across the room…. To keep her safe, they said.The boy had his own “body guard” assigned.And my heart sank. Something had to be done.She could not stay in this environment.We were still using hyperbaric oxygen therapy
and getting progress but there had to be more.I did more research. Her diet was
extremely healthy and free from anything inflammatory.Then we found eosinpahilic esophagitis and
removed eggs from her diet (in addition to the gluten and dairy and soy she was
already free of) and removed the cat from the house and she got better still.

In second grade, I decided that I would take a leap of faith and enroll her in
the Brain Balance Program.It was my
last ditch effort to get her mainstreamed.By May, her team recommended full mainstreaming in 3rd
grade.I
remember the school speech therapist saying... "Kelly ... this is a BIG
deal. Once they are in self-contained classrooms, it is hard to get out."I had to hold back my tears of joy.

Third grade in the mainstream classroom was quite an adjustment.Her constant scripting (reciting lines to
herself over & over again) was disruptive and her rigidity led to some
meltdowns.On her bad days, her screams
of frustration were heard throughout the hallways.However, her teachers called meetings often
to discuss what we should do.They involved
me in her education.They devised ways
to keep her focused and her anxiety levels down with schedules and
modifications.And the kids….they
embraced Marley.They watched out for
her.If there were younger kids
whispering about her in the halls, the kids in her class stepped forward and
said something to those kids.They would
not tolerate it.

Over the summer, we used ALA (alpha lipoic acid) and saw a whole new self-aware Marley emerge.It took her healing to a new level and
teachers noticed right away.
Fourth grade got better still, due in large part to a brand new, fresh out of
school, teacher.She was even-keeled,
never got upset, and worked very hard to accommodate Marley and her needs while
helping her reach her potential.One
day, she gave Marley a watch.Marley had
been anxious in music class and no one could figure out why.Turns out, there was no clock in the music
room, so Marley did not know when it was time to leave.The watch changed things for Marley
dramatically.Her anxiety came way
down.Her scripting stopped.We were off and rolling.Her reading was on-grade level.Math word problems were difficult but Math
computation was her strong suit.We got
her a laptop so she did not have to hand-write everything and her creative writing
took off too.

In fifth grade, Marley’s fourth grade teacher was moved up to fifth grade and
Marley got to have her again.We
discovered via lumbar puncture that Marley has Cerebral Folate deficiency, and
started her on Leucovorin for the folate and LevoCarnitine to support her mitochondria
and it was like her brain suddenly had the energy it needed to THINK. It has also helped her anxiety a ton. Her
teacher raised money and bought exercise balls for the kids to sit on instead
of chairs.The kids loved them.Marley loved hers too.Marley got into a routine.She was serious about her homework.She did it right when she got home and often independently.She was a transformed child.

As I am reliving all of these memories, I realize that Marley is
HERE…..in this big, noisy, echoing gym.She
is not sitting with me. She is not wearing noise-blocking headphones.She is not stimming.She is not flapping.She is not scripting.She is not in her own world.She is not being escorted by an aide
everywhere she goes.She is sitting with
her peers and then waiting patiently in line.She is looking for us to wave at us.She is smiling and fully connected.She is aware of this moment and all the excitement this time brings for
her.And this makes my heart fill with
pride and gratitude, for it is then that I grasp that sometimes you have to
feel the pain and the struggle and do the incredibly hard work to really, truly
feel the joy.

Marley has waited patiently in line, and finally, her name is announced into
the microphone.When it is, an enormous
cheer erupts from the audience. I gasp at the hoots and hollers for her and the enormity of
support from her fellow students, other parents and teachers in this gym.I start to shake gently as my tears start to
flow.It is evident that people love her
and have been cheering for her right along with us.Her success makes everyone in the building
proud of her.Marley takes her
certificate and poses for a picture with her teachers and then very casually
walks off stage just as she is supposed to do.She stands and sings a song with her class to the parents.She participates in a dance with the other
kids and calmly watches videos of moments past.Things that would have been impossible just a few short years ago.

I close my tearing eyes and just let these feelings rush over me like a tidal
wave.I slow my breathing and just feel
the pure joy of the moment…… because I have no doubt there will be more
challenges in the future but right now…..I just want to breathe in the
happy.

Saturday, April 11, 2015

Since it has been about a year
since we started on our journey with homeopathy, I figured it is good to sit
back & reflect on just how far we have come in a year.

A year ago, at age 3 1/2, my
youngest was severely allergic to seemingly everything.Foods, heat, emotions….even his own
tears.He was anaphylactic to dairy,
eggs, peanuts, tree nuts and rashed terribly with gluten. There were a host of new foods showing up on his allergy testing each year. In all honesty, I was deathly afraid of what
each day would bring.We could not make
it to breakfast without Zyrtec.Any high
histamine food (oranges, tomatoes, avocados, strawberries) would send him into
coughing fits and he was covered in eczema.Oh yes…and did I mention the eye itching?Oh my goodness the eye itching!The boy needed a cool washcloth over his eyes
at all times of the day.I was afraid he
would hurt his eyes with amount of itching he did.And forget it if he started to cry…..he was
allergic to his own tears!If he got
upset (and what toddler doesn’t), he would get hives all around his eyes that
itched like mad.And if he ran outside
in the heat, he broke out into an itchy rash.He had cholinergic urticaria for which the allergists advised me to
increase his daily antihistamine.We
had to leave several outings to come home & get him in a cool bath.He was miserable.Our family was at it wits end.

Enter
homeopathy.

I needed something that was not
allergenic and very gentle.He was
already on a great diet since he is allergic to most allergens anyway and we are a very low sugar, no chemicals kind of family.Since allergies are a sign of the immune
system gone awry, I needed something to help regulate it and bring his body
into balance again.I found a local
homeopath that specializes in allergies via a dear friend and I considered it was
worth a try.

As I pulled up to his little quaint office and walked inside with my son, I found myself thinking “Please
don’t be a witchdoctor!Please don’t be
a witchdoctor!”I had no idea what to
expect.This homeopath was very gentle
and sweet and I felt immediately at ease but the intake appointment was like
nothing I had experienced before.The
questions were unexpected.He asked
about my son's ailments and the timeline in detail.But he also asked about my son’s feelings,
his demeanor, what he liked and disliked. Did he do better at the ocean or
worse?Did he tend to be cold or
hot?Did he like being held or not?This was a whole new experience for me.

I walked out of
there very skeptical that there was anything this man could actually do for my
son.However, the hopeful side of me
remained willing to try.After two
grueling hours of detailed questions, the homeopath gave me a remedy to try
with Xander.He said give only one
dose.A total of two tiny drops.No follow-up doses until Xander's body did
what it needed to do with the remedy.Until his body had taken healing as far as it could with this
remedy.The homeopath warned me that
sometimes you might see a very mild exacerbation of symptoms before you see
healing.This should be very short-lived
and anything over a day should warrant a different remedy.

I went home and
gave Xander 2 drops of his first ever remedy.He got mild hives within 20 minutes of taking the remedy so I dosed
Benadryl and waited.By the next
morning, he still needed Zyrtec as he started to rash up and get itchy before breakfast…as
usual.BUT….by third day, he did not
rash before breakfast.Or….anytime at
all during the day.And that was the end
of our love affair with Zyrtec.Just
like that…..we no longer required daily Zyrtec with a splash of Benadryl added
in here & there when needed.

I walked back into
the homeopath’s office and said, “Okay.You have my attention.Tell me
more about this homeopathy stuff.”

This is not to say
his allergies are all gone……he still has severe food allergies, but we are continuing
to work on it.He no longer hives when
he cries.He can once again eat
strawberries and oranges and chocolate….and other high histamine foods.His color is much better.He is no longer horribly pale.

As symptoms pop up,
we address them.

My once chronically
constipated little boy that alternated between loose stools and tiny ball poops
and proclaimed by the ped GI doc to be "full of stool" according to
his KUB is now regular due to ONE remedy.After we solved that problem, he was finally potty-trained within a
month.

He was getting
nightmares and could not sleep through the night without screaming out for
someone to come into his room and he was terrified for us to leave.After a few weeks of my sleeping with him… in
his room… in his tiny twin bed and pure exhaustion, another call to the
homeopath gave us a remedy to help him sleep through the night.THAT was most welcome.

Then he started
getting chronic, daily bloody noses.After many home remedies failed, the pediatrician said we needed to see
the ENT.The ENT said steroid nasal
spray indefinitely. One call to the
homeopath and he said "we can stop bloody noses". I was skeptical but
indeed…..after we tried a few different remedies, we hit on one that
worked.To be fair, the bloody noses
have come back twice, but each time, the homeopath has given me a new remedy
and it has worked.Unbelievable. No steroids needed.

Around the holidays, he got sick with a cold and it was
quickly followed by ear pain and a fever.I know how antibiotics can ruin gut flora and I have seen many kids’
immune systems get crushed by using them, so I try to avoid them as much as
humanly possible.But when your child is
crying in pain, you get scared.It was
6pm on a Friday night.I called the
homeopath.He gave me a remedy to
try.I had to run out to the store and
buy it.I did not treat his fever as
that is the body’s way of burning off the infection.We gave him the remedy and put him to bed.I checked on him at 10pm, and he was sleeping
soundly and the fever was gone.He awoke
with no pain at all and his nose started running…. relieving all that pressure.

The same thing happened while we were on vacation.My son woke in the middle of the night with
ear pain.This time, he had different
symptoms.No fever and acted
differently, so he got a different remedy the next morning when I talked to the
homeopath.Thankfully, I had my
homeopathic kit.The first recommended
remedy did not work.He tugged on his
ear all day.The second remedy was
perfect and the ear infection was gone and drainage started.

Last summer, he had a bad rash on his lower legs.Thankfully, the homeopath gave me a remedy
and within a week, it was much better.Here is the rash before treatment:

And this picture is one week after a remedy to treat it:

These are just a few examples of what homeopathy has done for us.

WHAT IS HOMEOPATHY?
Homeopathy is the theory of “like treats like”.It is
based on theideathatsubstancesthatproducesymptoms of sickness in healthypeoplewillhave a healingeffectwhen you give
them in verydilutequantities to sickpeoplewhoexhibitthosesamesymptoms.Those very dilute quantities of substances
are called remedies.Remedies are meant
to spark the body’s own healing processes and bring the body back to
homeostasis.

Remedies are very specific to the individual and that is why using a homeopath
to pick the correct remedies for you is very helpful and the only way to go if
you are dealing with a chronic condition like allergies or asthma.

We have found homeopathy can be a lot of hit or miss. You can miss a few times trying to find the right remedy...but when you find it, it is like you have won the lottery. It is amazing to see.

You are not supposed to touch the remedies.Just dump it into your mouth and suck or dilute it in water and give a few drops of water. They are
sugar pellets sprayed with the remedy, so touching it may rub off the effect.

This healing journey has taken us many places and I am so grateful it led us to
homeopathy.I don’t want to imagine
where we would be without it.

Sunday, July 13, 2014

I have always had a lot of unanswered questions.There were a lot of pieces to the puzzle that
didn’t seem to make sense until I learned about Cerebral Folate Deficiency and
its association with autism.

Cerebral Folate Deficiency (CFD) is a relatively newly
identified disorder in which there is low 5MTHF (5-methyltetrahydrofolate)
in the CSF (cerebrospinal fluid) but normal 5-MTHF in the blood.5-MTHF is the bioavailable form of folate. Folic acid is the synthetic form of folate
and supplementing with it can often makes problems worse and not better. These kids need the bioavailable form of
folate.When there is not enough,
developmental delays can occur.Symptoms
can manifest as irritability, poor sleep, gross motor problems, seizures and
developmental delay among other symptoms.It often shows itself in young children and regression is typical.Often, but not always, these kids have a smaller
head circumference and CFD is linked to mitochondrial dysfunction in a subset
of children. Cow’s milk down regulates
folate receptor autoantibodies (FRAs), so going dairy free is very important.Folate receptor autoantibodies (FRAs) block the transport of folate into the Cerebral Spinal Fluid and they are being found at an alarming rate in children with autism. FRAs, dairy and mitochondrial dysfunction are not
the only way that CFD occurs.There are
a number of genetic mutations that affect folate metabolism.

I also discovered that the mothers of
these children often cannot break down folic acid themselves due to genetic
reasons.There are several gene
mutations that can lead to this problem.MTHFR is only one of them.The
mother’s shortage of folinic acid sets up their baby for problems in the
womb.Another noteworthy piece of
information is that birth control pills deplete the body of folinic acid, putting
young mothers-to-be at a strict disadvantage.

**Please note that taking folic acid, as
young pregnant mothers-to-be are advised, DOES NOT help.In fact, it may make problems worse because
these mothers cannot break down folic acid, which is the synthetic form of
folate.Instead these pregnant moms
should be taking folinic acid or L-5MTHF. A few prenatals have now started using the
good forms of folate in their prenatals.Thorne is one such company.

Folate is needed to support the metabolism of purines and pyrimidines which are the building blocks of RNA and DNA. They also are also very important for cells to make energy properly. If you are diagnosed with CFD, Leucovorin, a high dose folinic acid, is prescribed because it is a versatile form of folate.

The more I read, the more alarmed I
became.Everything I read was hitting
home in a very scary way.There were so
many red flags in both my & my baby’s history.First I will address what was concerning
about my history.

I had trouble getting pregnant for a year after stopping
birth control pills.Finally, I got
pregnant at age 28 and I was extremely sick during pregnancy.I was hospitalized several times and vomited a minimum of 10 times per day until
my body gave in and my water broke at 33 weeks old.She had a grade 4 IVH (Intraventricular
hemorrhage) at birth. Not enough
folate could explain this occurrence.

Following my first pregnancy with Marley, I had a
miscarriage and then an ectopic pregnancy that ruptured.Both of these could be attributed to not
enough folate.

Then I got pregnant
with my second child, Skylar, and at the advice of an applied kinesiologist, I
started taking L-5MTHF (the broken down form of folate with a methyl donor
attached for better absorption) and I was not as sick.And the baby did much better!!I did go into premature labor with her at 34
weeks but she held on until 39 weeks.Perhaps I was not taking enough L-5MTHF?

When I got pregnant with my third baby, I again took
methylfolate (800mcg), felt better but had lots of contractions.I went into premature labor with him at 29
weeks and was put on best rest until he came at 39 weeks.He is developmentally fine but has severe
food allergies.Again, Perhaps I was not
taking enough L-5MTHF?

More things that are concerning about my folate metabolism:

I have elevated MCH & MVH, which are indicators of
either not enough folate or not enough B12.

I am FOLR2 +/+ (which
will block folate receptors)

I am DHFR +/- (which converts
dihydrofolate into tetrahydrofolate)

I am SLC19A1 +/- (which is a transporter of folate and is
involved in the regulation of intracellular concentrations of folate.)

As for my daughter, there is even more
reason for concern and more red flags:

As I noted before, my daughter had had
a grade 4 IVH (Intraventricular hemorrhage) at
birth.She also has a syrinx in her
spinal cord that likely developed in utero as well.Not enough folate could explain these
problems.

She also has strabismus, which may be attributed to her
brain bleed OR it could be attributed to a Cerebral Folate Deficiency.

Marley was an irritable baby and she didn’t sleep well at
all.She slept through the night for the
first time at 18 months old, but it still was not consistent….a few days on and
several days off.All red flags for CFD.

At age 3, we started her on L-5MTHF (800mcg) and by the next
day, she could walk down steps independently.She was also having hours long screaming tantruming sessions, which
ended with staring spells which we believed to be absent seizures. They stopped when we started the
L-5MTHF.She has been on L-5MTHF ever
since.

When she was age 30 months, the genetics department pointed
out that she had an unusually small head and therefore, was a good candidate
for Rett’s disease, for which they tested her.The test came back negative along with a completely normal microarray.Around this time, she was diagnosed with
severe, low-functioning autism.Low-functioning,
regressive autism is a sign of CFD.

Marley also has genetic markers that indicate problems with
folate metabolism:

She is FOLR1 +/- (which
will block folate receptors)

She is FOLR2 +/-
(which will block folate receptors)

She is DHFR r +/- (which converts
dihydrofolate into tetrahydrofolate)

She is MTHFR A1298C +/- (which converts
5-MTHF to THF)

She is SLC19A1 +/+ (which is a
transporter of folate and is involved in the regulation of intracellular
concentrations of folate.)

Add all this to the fact that she fatigues easily, has
chronic constipation, has tight muscles on her left side, is still
developmentally delayed and has problems with focus and I was concerned. If she did have CFD, she may start to have
seizures once puberty hit.

Since this is a fairly new diagnosis and few mainstream
pediatric neurologists know about CFD being tied to Autism, I had to ask around
to see what doctor would be my best bet with whom to approach with all this
information.We have seen several neurologists
in the past and they have had nothing to offer us at all…..so I wanted to make
this appointment count.

If it turned out that she has Cerebral Folate deficiency,
she would be prescribed Leucovorin, which is high dose calcium-folinic acid in
an effort to bring up her levels of L-5MTHF in her CSF.

I was in luck.I live
in a city with great medical resources and a fabulous, well-known hospital and
there just happens to be a pediatric neurologist on staff that knows about and
understands CFD and it’s link to Autism.I made an appointment.

I don’t have much luck with doctors, but to my surprise and
pleasure, he was both wonderful and knowledgeable…….and concerned.He agreed with all the information I
presented to him and said he wanted to do a lumbar puncture right away to rule
CFD in or out. He said to me:

"Kids with
autism should have a full neurological and metabolic work-up to see if there is
something we can do. Autism is a set of symptoms and if we can find something
treatable to help with their symptoms we should do it."

Yes....after taking Marley to see several neurologists and developmental peds over the years who have tried
to send us out the door with an antidepressant or an anti-psychotic drug, or GI
docs that I had to beg to help my daughter when she was in terrible,
excruciating pain.....that afternoon I hit the jackpot.

He listened. He was interested in what I had done
to take her this far in her development. He said "if we can find something
that is treatable, many of my patients go on to be extraordinary adults. Not
just ordinary....but extraordinary because not only are they functioning
independently but they have extra gifts to share."

And the appointment was made for a lumbar puncture.

I was terrified.

We went into the hospital early in the morning.They used Versed & Fentanyl to sedate
her, but she is hard to sedate and even with the maximum dosage of both
sedatives, she sang to them during the procedure.

Recovery was hard.She was in extreme pain for 2 days.She was dizzy and couldn’t stand.We had her lie flat on her back & pushed fluids like crazy to get
her body to reproduce more spinal fluid to relieve the pressure.By the 3rd day, she had
excruciating headaches that were relieved only when she laid flat on her
back.I was panicked.But the neurologist told me that it can take
some kids a week to recover and to keep pushing fluids and keep her flat on her
back.I did and by day 5, things were
looking up.She was up and around for
about 30 minutes before the headaches set in.By day 6, there were less symptoms.By day 9 she was recovered from the lumbar puncture and the waiting game
for results began.

We were on vacation when I got the call from the pediatric
neuro resident who had done her lumbar puncture.She said ….

“We have about half of Marley’s results in and everything is
normal.”

I was shocked.I said
“Define normal.Tell me her numbers.”

She told me Marley’s 5-MTHF is a 44 (range 40-120).I exclaimed, “THAT’S NOT NORMAL! That is very
low!It is HALF of what it should
be.We want her to be between
78-82.Especially considering she has
been dairy free and supplemented with 5-MTHF almost all her life! Look at the
study published in 2013 by Dr Frye and Dr Rossingol showing that kids with autism
have levels anywhere from low 40’s to 80’s and that combined with FRA’s (Folate
receptor autoantibodies) puts them at a huge disadvantage.See the levels of the kids treated here. They
treated these kids with Leucovorin and the kids showed gains in several areas. See the study here.

The pediatric resident just told me to take my argument to
the attending doctor whom we had met originally. I did….and after hearing my
argument, he agreed with me that she needed to be treated for Cerebral Folate
Deficiency.I think he is still learning
about all of this because I had to tell him the dosage of Leucovorin that is
used to treat CFD and he easily agreed with me after trying to prescribe a much
lower dose.The neurologist said to look
for increased socialization, less emotional meltdowns, more tolerance to foods
(less picky eating) and better gross motor skills with Leucovorin.

All of this information is in the study and in current
literature on CFD and Autism Spectrum Disorders and it left me wondering why
pediatric neurologists are left in the dark on this subject.This is a huge break-through in Autism.And it is TREATABLE! If caught and treated early enough, Leucovorin
can provide significant progress or even a complete recovery of
both neurological and ASD symptoms.

In the 2013 study, 93 children were studied for Folate
Receptor autoantibodies and they were found in 75% of the
children.FRAs are only one cause of
Cerebral Folate Deficiency. From the abstract:“Given these results, empirical
treatment with leucovorin calcium may be a reasonable and non-invasive approach
in FRA-positive children with ASD.”

There is only one lab
that can measure FRAs in blood and they have recently reopened. However, the ONLY way to test for CFD is with a lumbar puncture.

It has become clear to me that our local pediatric
neurologist does not know enough about CFD to treat my daughter appropriately,
so I have made an appointment with one of the doctors that actually wrote the
study.He will see her in a few
months.I hope to have her on Leucovorin very soon and report to him how she is doing.I also know that bringing up
5-MTHF levels in the CSF is a slow process, so I don’t expect over-night
results.Instead I need to look for slow
and steady gains.

I am so hopeful for her future and I will keep you posted on her progress.

Friday, May 23, 2014

Doctor or practitioners’ appointments have consumed much of
my oldest daughter’s life.There has
been the pediatrician, the ophthalmologist, the pediatric gastroenterologist,
several neurodevelopmental pediatricians, pediatric neurosurgeons, several pediatric neurologists and
that doesn’t even begin to account for the biomedical doctors and
practitioners.My daughter needs all
these doctors to help manage her care…both biomedical and mainstream.

In my opinion, the best type of doctor to have when your
child has autism is a MAPS (Medical academy
of Pediatric Special Needs) or a DAN! (Defeat Autism Now!) doctor; however,
there may be times when your child needs to see a specialist.

When a child with autism sees a mainstream specialist, I
have found there are a lot of things to consider.Today I am going to talk about how I prepare
for meeting with a specialist because it has taken me a long time to learn
these lessons myself.

1.Ask around to find the most compassionate,
knowledgeable doctor in your area. In our case, this doctor needs to be
up-to-date with the most recent studies on autism and how it is intertwined
with metabolic problems, neurological, immunological and genetic problems.For example, if you are seeing a pediatric
neurologist, you want him/her to know about Cerebral Folate Deficiency in kids
with autism.If you are seeing a
pediatric GI, you want them to understand that kids with autism classically
have GI distress and you want them to be willing to investigate and treat that.Knowing what to expect from this specialist
is very helpful, so asking other parents that have seen that doctor for their
feedback is very helpful.If you are
extra-ambitious, you can read the specialist’s published papers if they have
any.This gives you an idea of where their specific interests lie and how they approach problem areas.

2.Do your homework.Research.This helps you speak the same language as the doctor and also helps you know exactly what to ask for…which leads us to
#3.

3.Know what you want from the appointment.A good doctor will ask “Why are you here and
what do you hope to get from this appointment?”Be ready to answer that question with specific answers.Be ready to make your argument as to why your
child needs testing in your opinion.Stay
away from open-ended questions like “What
avenues would be useful to explore?”Hopefully, you have this information before even stepping into the
doctor’s office. If you don’t, a MAPS (Medical Academy of Pediatric Special
Needs) or a DAN! (Defeat Autism Now!) doctor can help direct you. You want to have a set agenda when going into
the office.

4.Make sure that this specialist has access to all
of your child’s medical history BEFORE you arrive. Hopefully, the doctor will
take the time to review it before he or she even walks into the exam room.

5.Make a ONE page (not twenty) list of reasons why
you are here at this specialist’s office and what you want.For example, if you want testing for CFD, make
a list of the reasons you want this and the child’s history related to
this.For example, the child cannot
tolerate milk; the child responds well to methylfolate supplementation with
better cognition skills, child has staring episodes, etc.List as many reasons as you can think
of.And list them as symptoms….NOT as
your diagnosis.For example, if your
child has staring episodes…write down “staring episodes” – “Could this be
seizures?” (even if you very well know that they could be.)Make two copies of this.One to give to the doctor and one for you to
refer to as you speak to the doctor.

6.Make a one-page list of all your child’s
medications and supplements and their dosages and give it to the admitting
nurse so they can pass it on to the doctor.

7.Bring any new studies that you think may be
relevant to your child’s case.Since
much science is new and emerging in the autism field, sometimes we have to
bring in the peer-reviewed studies to show the doctor.Even if they have already read the studies, this shows the doctor
that you have done your homework and you don’t want to waste their time.

8.Be respectful of their time.Don’t be long-winded.Get to the point quickly and accurately.Answer all questions as honestly as you can.

9.Stay in their wheelhouse!Stick to the doctor’s strengths. That is why
you are there after all.Don’t ask a
neurologist questions about candida and don’t expect a mainstream GI doctor to
understand why you think MiraLax is bad for your kid because your kid has leaky
gut and the plastic in the MiraLax could go right into their bloodstream.They won’t get it.Don’t even go there.You can ask for alternatives to medications
(like MiraLax), but don’t go looking for an argument.

10.Lastly,
listen to the doctor.Genuinely listen
as a concerned parent.Don’t roll your
eyes or get upset.If that is how you
feel, wait until after he or she leaves to do it.Don’t
argue, regardless of whether or not you agree with what is being said. I don't
see anything to be gained by arguing.Bring up your points and let the doctor tell you his/her thoughts on the
matter.

I hope that these
quick tips make for an easier trip to the specialists office and I hope you get
as much as possible out of the visit.Good Luck!

Saturday, February 22, 2014

I am blessed to be married to an optimistic man.Every problem (or opportunity) is met
with:“It’s good to have options.”Or “We can handle this.”Or “It’s okay to feel how you feel.Now let’s figure this out.”His attitude tends to rub off on those around
him.

The best advice I ever got when starting on this journey of
recovery was to keep a journal.To keep
track of progress.To see what works and
what doesn’t.To keep a log of your
child’s behaviors – both good and bad.To watch the progress and the setbacks.The leaps and the regressions because all this knowledge can lead you to
the next step.

Recently, I took some time out to review old journals.They date back almost ten years now.They are mostly just notes from when I first
started giving her supplements.The
first was fish oil.She was non-verbal
then and it was a really tough time.In
my head, I remember how awful it was -- But as I read my journal, I read things
like:

11-30-04 (age 2)

“When reading a book that had a baby’s eyes highlighted, she
pointed to my eyes.Did great at
TEACCH.No crying spells and did almost
all her tasks!”

12/9/04 (age 2)

“I asked Marley what a ladybug says and she made a squeaking
noise!This is HUGE because she did
something on command.YAY Marley!”

And the entries go on like this…..highlighting all her
accomplishments – no matter how very small.I actually cheered her on in my writing with YAYs and WOWs!

Then I cried as I read about how she gets sicker and sicker.How I suspected seizures because of the blank
stares, flickering eyelids and terrible tantrums followed by a
“what-the-hell-happened” look on her face.Then I started timing the tantrums and noting how long they go on (over
an hour each time) and how very violent they are and noting her triggers….being
pulled out of the bath tub & changing her diaper could set her off for an
hour or longer.

Her bowel movements were sometimes up to 10 per day.Her poor butt was burning.Nothing I did could control her unstoppable
GI problems and messy stools.

I wrote about how I discovered DMG could help kids with
seizures and how I was elated when the DMG stopped her tantrums…..but made her
extremely hyper.I was doing all this on
my own.No one to guide me.But I recorded all my notes….all the studies
I was reading and my heartache when I took her to the neurodevelopmental
pediatrician who doubted every last thing I told him about her improvements on
fish oil and DMG.

But then I found a new doctor and the happy, positive
entries came back:

4/8/05 (age 2 ½)

2nd day of methylfolate and no DMG & new diet
with no white sugars or white flours and only two pieces of fruit per day.For the first time today, at Little Gym, she
stopped when the teacher said, “Freeze”.She did this THREE TIMES.Awesome!She also began to walk
on the balance beam with me holding her hands. YAY!

4/20/05

Changes since adding methylfolate (FolaPro) Chris and Nana
both notice more babbling, good spirits and generally happy and starting to
walk down stairs. Go baby!

I was cheering her on in my writing again.With every successful intervention, I got
more and more excited. You can see it in my writing.“I can do this….she CAN get better” was the
sentiment. Little by little, I gained more confidence as I could see her slowly,
slowly blooming.There were lots of lows
along the way but we just kept plugging along and what I learned was….Attitude
is EVERYTHING.

If you want something, go get it.Hire a good doctor that will stand behind
you.You are going to hit bumps in the
road…but without the bumps, the little things are not worth as much.This journey is not what I wanted for myself
(or anyone else), but I have learned so much.I have learned the importance of the right foods.I have learned that the body can heal itself
if given the right tools.I have learned
that you have to fight for what is right.I have learned to follow my intuition.I have learned that love is there…even in the darkest hours.I have learned to trust the man I love
because he has got my back.And I have
learned that it is all about attitude.Being grateful everyday for your blessings is essential.

So be grateful.Be
mindful.Be positive.You can do this.

***This post is dedicated to the Steffens family who have
made positive thinking an art.They
taught my husband how it is done and he taught me.And to my father-in-law, who would have
celebrated his 69th birthday today.I love you.And attitude IS
everything. ***

“The longer I live,
the more I realize the impact of attitude on life.Attitude, to me, is more important than
education, than money, than circumstances, than failures, than successes, than
what other people think or say or do.It
is more important than appearance, giftedness, or skill.It will make or break a company…a church…a
home.The remarkable thing is we have a
choice everyday regarding the attitude we embrace for that day.We cannot change our past…we cannot change
the fact that people act a certain way.We cannot change the inevitable.The only thing we can do is play on the one string we have, and that is
our attitude…I am convinced that life is 10% what happens to me and 90% how I
react to it.And so it is with you…we
are in charge of our ATTITUDES.”-Chuck Swindol, Author of “Attitude.”

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About Me

I am a mom on a mission to bring our daughter back to us from the grips of autism. This journey has shown me the importance of nutrition and supplementation in ASD kids, detoxification, green living and a great support system for healing. I have learned many lessons...some the hard way and I have created this blog to help anyone who may be interested in the lessons we have learned.